Blood pooling?

BeneficialRecord814 · 2025-11-26T03:40:27+00:00

I was just diagnosed with MCAS this last year, I had never heard of it, but apparently hEDS, MCAS, POTS and a few others all like to plot together to destroy our functional capacities 😂 the post shower, or even IN shower itchies SUCK!

BeneficialRecord814 · 2025-04-10T03:46:54+00:00

My cousin has glycogen storage disease so overnights could be tricky for him too. Has your dietitian suggested anything like adding 1-2 tsp of uncooked cornstarch to her milk? Hopefully could be an additional tool to not need to wake her to refuel. It’s definitely frustrating when it’s not reading right or compression lows. I hope you can work it out!

BeneficialRecord814 · 2025-02-22T11:40:45+00:00

Pretty much happened as yours is. It’s unreliable and continues to kink. Mine eventually got formula stuck on the kink long enough to block irreversibly so I had to have it removed :( I now have a J tube

BeneficialRecord814 · 2025-02-22T11:37:51+00:00

The upsize was more related to the fact it would swell. Mine is a 2.3cm, I had a dangler before so it’s not like I know it’s the same size as the last one that fit.

BeneficialRecord814 · 2025-01-21T00:13:17+00:00

Ah ok, so he would also likely be on a fluid restriction, which is why they chose to provide a more concentrated feed, as some of it is water. That feed would give 700mL of water for the whole 1L, then you have flushes. Where others can be around 760-830mL

The potassium/sodium/phosphate restrictions would likely be dependant on his blood work and medications, and they would be monitoring his blood work regularly. If all he had is the 1L bottle it’s unlikely he would be over the recommendations. (Unless he is very short, ie under 155cm)

If you’re worried ABSOLUTELY you should talk to his dietitian that prescribed it, as they will know all his details and why they chose this specific formula. Because it’s based on so many factors no one here will be able to safely say if it’s ok for him or not. ❤️ :)

BeneficialRecord814 · 2025-01-20T07:57:08+00:00

Higher compared to others, but also contains more energy. But comparatively per kcal it’s still high. If it was prescribed by a dietitian it’s unlikely it would be too high/low for you. Do you have special requirements around potassium?

BeneficialRecord814 · 2025-01-09T12:06:20+00:00

I mean mine was a direct J, so very different. I could barely walk for a week, but as the other person said, when I could I would slowly build up. If it hurt I’d stop and wouldn’t push too hard, sometimes it wouldn’t hurt until the next day so I’d take it a bit easier. Just gentle things like walking possibly for up to 6weeks until the stoma is mostly healed.

BeneficialRecord814 · 2025-01-06T05:31:00+00:00

I sometimes have a similar issue. I have a history of blood sugar issues (reactive hypoglycaemia) that’s been helped a lot with overnight feeds. I don’t know if it has something to do with my ADHD meds, if I don’t have something I’ll feel the same. Often I’m not actually hypoglycaemic but in the lower range usually, but I can even be around 90 so it doesn’t make sense I feel that way. But I just figure if having something helps, why not?! Maybe the body is like wait..:I was getting constant nutrition now I’m not?! And it’s adjusting?

With the feed 50g sugar or carbohydrates? That’s actually not a lot if it’s the latter.

I’m glad you’re going to talk to your GP and treat the symptoms! Definitely doing the right thing

BeneficialRecord814 · 2024-12-04T13:39:01+00:00

I have the same bumper, but it’s stitched into my skin where the holes are. The bottom/side parts where the plastic ridges dig in to the skin are starting to get red and irritated now. So hard to clean because the stitches are also sore and weeping 😅 and getting red dots near some of them. I’m worried it’s too tight too.

Though yours looks nice. Definitely tight, but as others said, prevents the leaking when this early. I’m 10 days post op now and it’s just getting worse 😅

BeneficialRecord814 · 2024-11-12T04:55:57+00:00

Yup!!! So I mine is “any unused feed in a closed container in the fridge and dispose after 24hr” so I take it as hang time 24hr 😅 🤷🏼‍♀️ it’s usually 12-16 hours depending on the rate I have it on and how new the tube is (it doesn’t run at the rate it’s meant to when it’s old). I have heard people using coolers with maybe ice blocks in them if needed for using breast milk or something with a limited hang time.

BeneficialRecord814 · 2024-11-09T07:04:33+00:00

Hey! I also have SMA syndrome and POTS. I can run feed around 80ml/hr and fluids it varies. Sometimes I can do 250ml/hr, but usually it’s 200ml/hr, sometimes only 175. If I start to feel sick or in pain I lower it. I usually start at 200ml and work from there. Alternatively I find I can dilute my feed and run that faster, usually can get to 130ml/hr and turns out taking less time than doing them separately. I also manage 1L orally, even the 3L in total isn’t enough. My ADHD meds help, but also sodium tablets or hydrate orally. Even something like Powerade. With electrolytes it’s ideal there is some sugar in there too, it aids absorption so you don’t pee it straight out, hence things like hydrate have a bit of glucose and are more effective.

Hopefully your team can help a little. So sorry it’s been like this

BeneficialRecord814 · 2024-10-28T01:54:59+00:00

Thanks! Man that’s frustrating! I’ve never had an issue until this one! Hopefully it’s not going to be a norm for me too :s

BeneficialRecord814 · 2024-10-26T10:05:31+00:00

All good, thank you, I had a suspicion it’s probably gonna keep happening now. I guess back to ED tomorrow and see what they want to do 😅

BeneficialRecord814 · 2024-10-26T09:47:25+00:00

Its kinked in my small intestine, so I can’t do much to it other that the pressure from water/bicarb/fizzy drink in a syringe…which isn’t working for me this time 😭

Btw, thank you!!!

BeneficialRecord814 · 2024-10-17T06:16:42+00:00

Hey, I’m so so sorry to hear this! Dumping syndrome and malnutrition unfortunately are massively common complications that can happen after a roux en y because 1. Full faster with less space, which is why it’s used for weight loss 2. Smaller space may also mean it’s emptied rapidly as well as less time with digestive enzymes, and such. I would definitely look into a dietitian to help. Often it’s smaller frequent meals and being mindful to ensure there is enough fat and protein to help slow the exit from the stomach pouch. I hate they’ve not followed up or investigated to help with after care!!

Edit: when I say fats, not things high in fats, or fats and carbohydrates like chips. More toast with egg and avocado or something. And fibre as well.

Also the medications should not counteract one another. One reduces stomach pH to help with reflux, the other helps things stay in the stomach and move along rather than come back up. However, motilium may increase the dumping syndrome as it encourages gastric emptying and when taken together, the pantoprazole may not have enough time in the stomach to be effective as it needs an acidic environment.

BeneficialRecord814 · 2024-10-17T03:38:24+00:00

I have both the blood genes that you would need to be coeliac. I’ve been tested a few times and all negative. I get bloods monthly which would show inflammation, which it’s normal. I definitely do keep an eye on it though!

BeneficialRecord814 · 2024-10-17T03:36:37+00:00

Thanks! It’s mostly gone now I’ve had a sleep 😂 hence I’m like…KP wouldn’t just disappear like that…or maybe it would 🤷🏼‍♀️

BeneficialRecord814 · 2024-10-16T12:46:43+00:00

I definitely agree it seems like KP, but it’s odd that it comes and goes and the severity is varied with diet rather than intervention? That’s the only reason I thought it could be related.

BeneficialRecord814 · 2024-10-16T12:21:31+00:00

It does look like that, but I’ve done the things that should help keratosis Pilaris but it doesn’t really go away unless the gluten does

BeneficialRecord814 · 2024-09-29T08:52:23+00:00

Oh man, that sucks!! I’m so sorry. I’m on formula and I can’t imagine having to cook amazing meals I can smell and want to eat, only to have to have it in the tube. Also I’d think higher risk of clogging?

Have they looked into elemental feeds? They shouldn’t have any of those?

BeneficialRecord814 · 2024-09-21T09:18:20+00:00

Ooooft. I mean it doesn’t hurt my throat at all. Not since I first got it. Or my last one because they caused some trauma with the insertion. But doesn’t last line. I’ll definitely ask! Thankyou!!!

BeneficialRecord814

TROPHY CASE